Share your Knowledge on Parkinson's Disease Self-Care

Assess techniques contributed by the community and add your own ideas!

Learn More

PS. We'll Raffle $100 Amazon Gift Cards Among Participants!

Living with Parkinson's...

...comes with with challenges, what are your practical ways of dealing with them? We want to hear about the ups and downs of the community; We want to hear about self-care.

Hearing you and your loved ones!

You're really the only one who knows how you practice self-care and how it works. We want to hear your story. And we're not here just to hear about problems -- we want to also hear if everything is going great! This will help us understand you better and do better research. Anything goes.

Keeping it simple.

Your data will remain 100% anonymous. At the end of this study, you'll be offered'a chance to enter your email to a list, hosted on an entirely separate site. This way we can let you know about the developments and invite you back to the next stage of this study. By participanting in this study, you will help Parkinson's Disease researchers and ultimately the whole community.

Thank you in advance.

If you ever wish to have your data deleted, please store this identifier now and email it to us later (it's the only handle we'll ever have to your data): rand-1618317678juKjOYqMOHmHngT

Consent Form

INTRODUCTION: Parkinson’s disease challenges daily life. We are collecting a repository of self-care practices on Parkinson's. People living with Parkinson's are the expert on self-care and coping techniques, we invite you to share your experience. We want to hear how you take care of yourself or your close ones, as well as techniques for coping with daily tasks and practices of self-care. It can be related to exercise, diet, medication routines, anything you have found working for you. These are the things your doctor cannot tell you!

Your data will remain 100% anonymous. At the end of this study, you'll be offered the opportunity to enter your email to a list, hosted on an entirely separate site. This way we can let you know about the developments and invite you back to the next stage of this study. By participating, you will help researchers and ultimately the whole Parkinson's community.

Thank you in advance!

If you ever wish to have your data deleted, please store this identifier now and email it to us later (pdstudy@crowdcomputing.net): rand-1618317678juKjOYqMOHmHngT
This research study consists of two sections: 1) a questionnaire about your demographics and experience with Parkinson's disease 2) a data entry stage where you get to submit new self-care techniques and rate existing ones.
PARTICIPATION: You may discontinue your participation at any time.
PRIVACY: The information that you will provide will be used for the purposes of academic publications or in algorithm development (e.g. for computational analysis of your responses).
TIME INVOLVEMENT: The time to participate in this study can vary greatly. Some participants take 1 minute, some 20. But in general, your participation in this study will take between 3 - 10 minutes.
RISKS AND BENEFITS: This study poses no risks beyond those involved in normal, daily reading, writing, and computer tasks. There are no foreseeable psychological, social, or legal risks, other than those in a normal task where you are asked to reflect your life.
PAYMENTS: Participation in this study is not compensated. You will be eligible to enter a prize draw in the end.
SUBJECT'S RIGHTS: If you have read this form and have decided to participate in this project, please understand your participation is voluntary and you have the right to withdraw your consent or discontinue participation at any time.
CONTACT INFORMATION: If you have any questions about this study, you may contact M.Sc. Elina Kuosmanen, at elina.kuosmanen@oulu.fi.
Store and email (pdstudy@crowdcomputing.net) this identifier if you wish to delete your data later: rand-1618317678juKjOYqMOHmHngT
Click the button below to give your consent and proceed with the study.

Initial questions 1/2:

Initial questions 2/2:

Please answer on behalf of the person with PD if you are not a PD patient yourself.

Feel free to round to the nearest number or estimate if you cannot remember precisely.
Feel free to round to the nearest number or estimate if you cannot remember precisely.